Featured
Freya’s story
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What is it like to go for years no knowing what is wrong with your child? Read Freya's story.
News and stories
All of the latest news and updates from Genetic Alliance UK can be found below. This includes the release of our latest reports and findings, as well as pieces that our member organisations have requested that we share.
We also share stories, images and experiences from those living with genetic, rare and undiagnosed conditions. Individuals affected by these conditions are at the heart of everything that we do and we want to champion these communities by amplifying their voices, individually and collectively.
If you’d like to have your story included on our website then get in touch.
Featured
Eti’s story
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Eti's mum Hana shares her family's story of how having a child with an undiagnosed genetic condition impacts their family
Aiza’s Story
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Aiza was diagnosed with Molybdenum Cofactor Deficiency (MoCD), an ultra-rare genetic condition, just days after birth. Through sharing Aiza’s journey, her family hopes to raise awareness of rare conditions and help others facing similar paths feel less alone.
The Scottish Parliament and Welsh Senedd elections are taking place on Thursday 7 May 2026
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There are over 400,000 people in Scotland and over 180,000 people in Wales living with a genetic, rare or undiagnosed condition. For too many of them, Scotland’s NHS and social care system is failing to deliver equitable care.
An update on access to medicines policy for rare conditions
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A flurry of policy activity is underway that concerns access to innovative new medicines in the UK. We know this is atopic of importance for many of our member organisations, including the MND Association, which recently authored an article on challenges it had experienced with Early Access to Medicines Schemes (EAMS).
Involvement by design: Opportunities to champion our report’s recommendations
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Since publishing our report ‘Involvement by design: How to address structural and cultural barriers to PPIE in academic research’ in January 2026, we have been encouraged by the response from across the research community.
New report by LifeArc Hub’s Policy Working Group: More trials, better data, faster access
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We're delighted to share a new report that Genetic Alliance UK has developed on behalf of the Policy Working Group of the LifeArc Translational Centres for Rare Disease Hub: ‘More trials, better data, faster access: Opportunities to innovate in translational research for rare conditions.’
Welcome to Sharon Hodgson MP, Parliamentary Under-Secretary of State in the Department for Health and Social Care
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Genetic Alliance UK welcomes the appointment of Sharon Hodgson MP as Parliamentary Under-Secretary of State in the Department for Health and Social Care. Under this portfolio, the Minister will be responsible for rare diseases.
Latest England Action Plan out
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The latest Action Plan to implement the UK Rare Diseases Framework in England is out today. Minister Ashley Dalton, Parliamentary Under Secretary of State for Health and Social Care, introduced the paper on Tuesday at the Rare Disease Day Westminster reception. As at last year’s event the minister praised Genetic Alliance UK and our members for the advice and support we have provided to this plan’s delivery. The minister also spent time before her speech meeting many of our members and people living with rare conditions.
Remembering rare conditions – Huw’s story
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After a phone call revealed his baby daughter had cystic fibrosis, Huw reflects on the shock, hope, and the urgent need for fairness in rare disease care.
Involvement by design: How to address structural and cultural barriers to PPIE in academic research
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New report on how to address structural and cultural barriers to PPIE in academic research